{"id":3961,"date":"2019-11-22T10:42:06","date_gmt":"2019-11-22T18:42:06","guid":{"rendered":"http:\/\/blog.silviaskingdom.com\/?p=3961"},"modified":"2019-11-22T10:49:41","modified_gmt":"2019-11-22T18:49:41","slug":"nicky-makes-the-news","status":"publish","type":"post","link":"https:\/\/blog.silviaskingdom.com\/?p=3961","title":{"rendered":"Nicky Makes The News :-)"},"content":{"rendered":"\n<p>Thanks to the Italian Consulate of Los Angeles Nicky was able to have a day where a Professional Chef gave him a private cooking lesson. The Chef is Michelin Star recipient Luigi Fineo &#8211; who is the head chef of N10 Los Angeles, a fine restaurant owned by famed Italian soccer star Alessandro Del Piero. <\/p>\n\n\n\n<p>Here&#8217;s the video:<\/p>\n\n\n\n<iframe loading=\"lazy\" src=\"https:\/\/abcnews.go.com\/video\/embed?id=67153059\" width=\"640\" height=\"360\" scrolling=\"no\" style=\"border:none;\" allowfullscreen=\"\"><\/iframe>\n\n\n\n<p>I want to thank everyone for the kind words, donations and gifts they sent to Nicky via his <strong><a rel=\"noreferrer noopener\" aria-label=\"GOFUNDME (opens in a new tab)\" href=\"https:\/\/www.gofundme.com\/nickyz?pc=wd_md_campimage_r\" target=\"_blank\">GOFUNDME<\/a><\/strong> and his <strong><a rel=\"noreferrer noopener\" aria-label=\"AMAZON WISH LIST. (opens in a new tab)\" href=\"http:\/\/www.amazon.com\/gp\/registry\/wishlist\/2UN773Y84TK6A\/ref=topnav_lists_2\" target=\"_blank\">AMAZON WISH LIST<\/a><\/strong> following the airing of the segment. We appreciate it more than you know. I would also like to thank those that responded <strong><a href=\"https:\/\/www.facebook.com\/NickyLivingWithEB\/posts\/2522409417836454?__xts__[0]=68.ARDhXMRNKBYxZlZ_o-sClaDNcdPRVxnEwju90sMsPS-JEMNug-U7rqEABalSYRReEgFkmhoWfIvVmVRkoOWcbZYUAr0xXk5_hB-LL_XNzcVjCff-RpQ4Ax5xR7qpkKOY9fllAvrXiZz3XalTLnTJ_gPqz8AwcBAMyTG-xfbottnRT_7qSHpNS4f_g6Pqw0KjmPZIFrdg798wZdPjM1KLYQmqaitSG6PzoozkZ_ZR6P_3RTqatXMfvLweXwLQHDwn4q_oioWbyyzxbEZPLPDbsLhulpuq9PzhBOtfSbTiR8-cdt8-BWduD-LpAQKRUNzn9qnZnnENpVTpVvy7LERrT70e8Q&amp;__tn__=-R\" target=\"_blank\" rel=\"noreferrer noopener\" aria-label=\"to my update (opens in a new tab)\">to my update<\/a><\/strong> regarding Nicky&#8217;s 23rd Birthday on November 25th and sent him gifts. We will have a big celebration on Thanksgiving Day as we always do. <\/p>\n\n\n\n<p>For those seeing Nicky for the first time, a little about his condition. He was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB for short), which is a recessive condition. They don&#8217;t test for it during pregnancy because it&#8217;s too rare. It never showed up in my family before, nor his dad\u2019s as far as we know.&nbsp;<br>The only way a baby is born with RDEB is if BOTH parents are carriers, and even so, there is only a 25% chance of showing up. It&#8217;s a roll of the dice each pregnancy. Furthermore, the subform that Nicky has (Generalized Severe, who used to be called Hallopeau Siemens) is so rare that there are only a little over 100 cases nationwide.<\/p>\n\n\n\n<p>What the reporter said about the bankruptcies is unfortunately true. Because the condition is so rare, insurance companies have often refused to pay for bandages, and I often wondered how anyone with a sick child can somehow afford to pay $20-35 co-pays for therapy\/Doctor appointments several times a week. On top of the daily challenges of having a child in pain every day, the financial ones are a &#8220;thank you for kicking me while I&#8217;m down&#8221; situation. Frustrating doesn&#8217;t even cover it. The whole story is in my book <strong><a rel=\"noreferrer noopener\" aria-label=\"Butterfly Child (opens in a new tab)\" href=\"http:\/\/butterflychildamothersjourney.com\" target=\"_blank\">Butterfly Child<\/a><\/strong> (buying my book is another way you can help me cover medical costs. Thank  you!)<\/p>\n\n\n\n<div class=\"wp-block-image\"><figure class=\"aligncenter size-large is-resized\"><img loading=\"lazy\" decoding=\"async\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2019\/11\/eb_nicky.jpg\" alt=\"\" class=\"wp-image-3963\" width=\"540\" height=\"540\" srcset=\"https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2019\/11\/eb_nicky.jpg 1080w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2019\/11\/eb_nicky-768x768.jpg 768w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2019\/11\/eb_nicky-150x150.jpg 150w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2019\/11\/eb_nicky-600x600.jpg 600w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2019\/11\/eb_nicky-640x640.jpg 640w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2019\/11\/eb_nicky-425x425.jpg 425w, https:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2019\/11\/eb_nicky-50x50.jpg 50w\" sizes=\"auto, (max-width: 540px) 100vw, 540px\" \/><\/figure><\/div>\n\n\n\n<p>I adore my son. I simply worship him. Despite my love for him, and despite my best efforts, I cannot take away his condition. I desperately wish that I could, but I can\u2019t. And as capable as I think I am, I know that I am powerless over EB itself and equally powerless to take away any of his considerable pain. It\u2019s our reality. And in my better moments, I accept our world as it is, not as I wish it would be. I\u2019ve come to appreciate realistic expectations. Reality can be tough companion at times, but it\u2019s an honest friend.<\/p>\n\n\n\n<p>The movie <strong><a rel=\"noreferrer noopener\" aria-label=\"Life is Beautiful (opens in a new tab)\" href=\"https:\/\/amzn.to\/338dhuV\" target=\"_blank\">Life is Beautiful<\/a><\/strong> has taught me that even the most grim reality can be transformed thought the power of a positive perspective. That&#8217;s what I try to do and that&#8217;s how I&#8217;ve talked to Nicky since he was born.<\/p>\n\n\n\n<p>Thank you for all your love and help.<br>Love &amp; Light,<\/p>\n\n\n\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"204\" height=\"228\" src=\"http:\/\/blog.silviaskingdom.com\/wp-content\/uploads\/2017\/01\/ZHM_BlinkieDoll11-vi.gif\" alt=\"\" class=\"wp-image-2456\"\/><\/figure>\n<div class=\"fb-background-color\">\n\t\t\t  <div \n\t\t\t  \tclass = \"fb-comments\" \n\t\t\t  \tdata-href = \"https:\/\/blog.silviaskingdom.com\/?p=3961\"\n\t\t\t  \tdata-numposts = \"20\"\n\t\t\t  \tdata-lazy = \"true\"\n\t\t\t\tdata-colorscheme = \"light\"\n\t\t\t\tdata-order-by = \"reverse_time\"\n\t\t\t\tdata-mobile=true>\n\t\t\t  <\/div><\/div>\n\t\t  <style>\n\t\t    .fb-background-color {\n\t\t\t\tbackground: #ffffff !important;\n\t\t\t}\n\t\t\t.fb_iframe_widget_fluid_desktop iframe {\n\t\t\t    width: 100% !important;\n\t\t\t}\n\t\t  <\/style>\n\t\t  ","protected":false},"excerpt":{"rendered":"<p>Thanks to the Italian Consulate of Los Angeles Nicky was able to have a day where a Professional Chef gave him a private cooking lesson. The Chef is Michelin Star recipient Luigi Fineo &ndash; who is the head chef of N10 Los Angeles, a fine restaurant owned by famed Italian&#46;&#46;&#46;<\/p>\n","protected":false},"author":1,"featured_media":3964,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[4],"tags":[679,682,684,603,683,680,236,681,273],"class_list":["post-3961","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","tag-abc7","tag-alessandro-del-piero","tag-amazon-wish-list","tag-bankruptcy","tag-gofundme","tag-italian-consulate","tag-italian-culture","tag-luigi-fineo","tag-recessive-dystrophic-epidermolysis-bullosa"],"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/3961","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=3961"}],"version-history":[{"count":4,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/3961\/revisions"}],"predecessor-version":[{"id":3967,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/posts\/3961\/revisions\/3967"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=\/wp\/v2\/media\/3964"}],"wp:attachment":[{"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=3961"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=3961"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blog.silviaskingdom.com\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=3961"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}